Able to breathe

Waiting to Take a Breath

Oakville’s Keith Childerhose was diagnosed with diffuse panbronchiolitis (DP) at 25 years old. Now he is in critical condition at Toronto General Hospital waiting for a double lung transplant. Here photographer Nikki Wesley speaks with wife Sarah Taylor.

Able to breathe

PHOTO COURTESY OF SARAH TAYLOR

POST-TRANSPLANT: Keith Childerhose undergoing plasmapheresis — a transfusion that removes his blood, spins it to split the plasma from the blood cells, and reintroduces it with new plasma — a day after his double-lung transplant on Jan. 29. Once a day for five days post-transplant, Childerhose would undergo the treatment because of a high number of antibodies in his blood.

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“When I heard that, I thought, ‘OK. Perfect.’ That’s exactly what you want... He’s doing really, really well and the doctors are very happy with his progress,” said Sarah Taylor, Childerhose’s wife.

“We cannot express how appreciative we are of the donor and the donor’s family for supporting their loved one’s wishes. None of this could have happened without someone making that decision and the family supporting it.”

On Tuesday, Jan. 29, Childerhose underwent a seven-and-a-half hour surgery at Toronto General Hospital (TGH) for his double-lung transplant — two days later, Taylor posted a YouTube video of him doing a Gangnam Style parody in celebration on the Facebook page Lungs for Keith to Breathe.

He was clearly getting back to his old self, said Taylor.

“He’s now up every day and walking around the hospital. It depends on how much sleep he’s had the night before, it directly correlates with how long or far he walks,” she explained. “Yesterday, (Sunday, Feb. 3) he didn’t walk too far, but the day before he was literally running around the floor and dancing in the aisles with the nurses — he’s back.”

When asked how his new lungs were treating him six days post-transplant, Childerhose said via e-mail, “It’s like all the bad chapters in the book have ended and a really great new chapter has begun.”

Taylor says her husband’s appetite has also returned and he’s been eating on his own for the last several days; going from taking two to three hours to eat a simple meal (pre-transplant), to downing a bowl of tomato soup, some juice and milk in 10 minutes.

“He just couldn’t eat it fast enough and was asking, ‘What’s next?’”

She attributes Childerhose’s progress to the extensive physical rehabilitation he underwent prior to his surgery.

“It’s not uncommon for people who have spent an amount of time in ICU pre-transplant, like Keith, to have a longer than usual recovery, but because I think he had done extensive physical rehab before his surgery — at West Park Healthcare Centre in Toronto, and the rehab program at TGH — his body was in as good of a shape as it could be, so I think that’s helped,” Taylor said.

Childerhose was diagnosed with diffuse panbronchiolitis (DP) at the age of 25 and had been fighting the disease for the last 15 years.

DP is a severe and rare disease that causes fluid to continually build up in the lungs, similar to cystic fibrosis, and is traditionally specific to men of Asian descent living in China — Childerhose, a Caucasian male living in Canada, was told by his doctors he was the only person in the country to have it.

“Doctors seem to think that the disease Keith has was specific to his lungs, and won’t come back into the new lungs,” Taylor said. “The issues with transplants become with the other organs because you are immunosurpressed (have a weakened immune system)... you are vulnerable to any other disease. You have no antibodies to fight them off.”

Transplant patients typically are out of hospital between two-four weeks, depending on how quickly their bodies recover and deal with the extensive post-surgery rehabilitation.

Childerhose has since moved from the 24-hour nurse dedicated Intensive Care Unit (ICU) at TGH to what the hospital calls a “step-down” unit where he’ll have one nurse he will share with another patient.

“The step down is a step up, as far as I’m concerned,” said Taylor.

For the next six months, Childerhose will take part in a regular regiment of physical rehabilitation at TGH and then, alternating between the Toronto hospital and a rehab program at Credit Valley Hospital in Mississauga. As that program eases up, Childerhose will continue his rehab at his own gym with regular walks and exercise.

“He will be doing physical rehab (in one form or another) for the rest of his life... in order to keep his lungs working hard,” Taylor said. “His body for so long was breathing short, scattered breaths, so he needs to retrain his brain to breathe properly. A lot of it is mind over matter.”

Although, Taylor says she will now shift her focus to helping with her husband’s post-transplant recovery, she adds she still plans to continue her support and advocacy of the Oakville Be A Donor awareness campaign, which is part of the Trillium Gift of Life Network (TGLN).

Overseeing organ and tissue donations across Ontario, TGLN recently announced a record-breaking 1,053 organ transplants were performed in the province in 2012.

More than 250 deceased organ donors and their families gave “the gift of life” last year, a 15-per-cent increase from 2011.

According to TGLN’s website, 1,514 people in Ontario are currently in need of organs (as of Feb. 1), with only 22 per cent of residents registering their consent to donate their tissue and organs.

Of the 2,608,721 registered donors in the province, 45,479 are from Oakville (as of Feb. 6) — taken from www.beadonor.ca.

The Be A Donor campaign has reached 62 per cent of its target of getting 300,000 new donor registrations by March 31, but Taylor says there’s a large demographic that’s still not getting the importance of the message of organ donation.

“That’s the baby-boomers and up. The problem is, someone who is 75 thinks well no one wants my ‘old stuff.’ But I can’t stress enough that people do. Somebody who is dying and needs something to survive, if the doctors have determined it (the organ) is viable, they don’t care how old it is,” she said.

“You’re not too old to register. People want your ‘old stuff’ because it will give them a new lease on life. It’s so important that those people get reached.”

Residents can get more information about the Be A Donor campaign on its website or on Twitter @OakBeADonor. To find out more about donor registration, visit www.giftoflife.on.ca or call 1-800-263-2833.